I have had ME for about 6 years now but it remained undi...

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I have had ME for about 6 years now but it remained undiagnosed until very recently as the various GP's I saw did not consider my symptoms problematic. Having been told 'there was nothing wrong with me' for so many years yet still experiencing flu-like symtoms, post exercise malaise, repeated flu bugs and exhaustion, delayed my recovery and was pretty depressing. I then self-diagnosed by reading about Chronic Fatigue/ME and am now seeing a homeopath who also is knowledgable about nutrional supplements. The books are American, one is by a Doctor and there seems to be much more research over there on treatments and solutions. The books support the supplements I have been recommended so I do know there is evidence to back them up.

I am taking adrenal support and thyroid support supplements, licorice and siberian ginseng for energy, echinacea for boosting the immune system and two homeopathic remedies. I have reduced meat intake and increased vegetables, pulses and fruit etc (ie really really good diet!). Since following this treatment over the last three months I have felt noticably better to the point of feeling normal for much of the time, albeit with some relapse when I do too much.

I have also worked through all my issues on stress (the main cause in the first place) and anxiety and would recommend general counselling or again lots of books on stress reducing lifestyles and techniques.

Please note that everyone with ME will have different symtoms and treatments that help so you do need someone to help you through the minefield of nutritional supplements.

Recommended reading: From Fatigued to Fantastic by Jacob Teitelbaum and Living Well with Chronic Fatigue and Fybromyalgia by Mary Sholom.

This website is rather depressing reading for ME sufferers as it seems to imply little or no cure with poor prognosis. I do hope my symtoms improve and the research I have done seems to give me encouragement. Also it recommends only a limited number of conventional medicines here but there are other nutrional supplements that help (see book mentioned above)that have been researched.

Hope this is useful for other suffers as it is a horrible illness.

[i:693a11fe09]This message was automatically imported from the original Patient Experience[/i:693a11fe09]

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  • Posted

    I was diagnosed in the same way. Kept going back to Docs telling them something wasnt right. I was anaemic but that was masking the CFS so once my iron levels were up and I still felt lousy they went back to the drawing board, took loads more blood and then I read up on my symptoms online and found I was showing almost all listed: Tiredness, exhaustion, flu like feeling, muscles tired on minimum excertion, headaches, depression etc.

    Once diagnosed I looked at what I needed to do and over 6 months I got reasonable control on the condition just before my wedding and enjoyed an active honeymoon in the rainforest, on safari etc which was lovely. I had to be very patient and pace myself very carefully which was frustrating at first but improved my diet, took immune support supplements and vitamins. I used to be very active before I fell ill so I rested completely for a few weeks with no exercise after work then slowly introduced a regime including Yoga and Walking then gradually built up to light gym sessions, light jogging and went from there.

    Unfortunately I was involved in a car accident after my honeymoon which set me right back where I started and I am currently having back problems as a result so cant follow the regime again yet which is really getting me down but I know once my back is better I will get back on top!

    It is possible but you have to be very patient and keep at it and once you get your first normal day you know you have cracked the formula!

    Stay well!

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  • Posted

    I was going to say 'welcome to the forum' as well but as I read your post I got the feeling that you are not looking for a support forum but merely wanted to share what has obviously worked for you.

    I am very glad that you have managed to get yourself to a place that you are happy with, but I am sorry that you found it necessary to call our little community 'depressing'. For that reason we will not mind at all if you do not choose to stay.

    We are all at varying stages and lengths of this illness and our treatments and approaches are as different as we are. what works for one does not necessarily work for another. I personally have explored many avenues at my own expence, including a nutritionist and a homeopath.

    One thing we have in comon that keeps us all going is our little cyber family that we have here, with all its ups and downs and unconditional support one for the other.

    I feel very protective of my fellow 'pacers' and I am sorry that you find us depressing. sad

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  • Posted

    here here Alicia. I get myself really wound up my people who think they have a cure. :twisted: If you had truley suffered from this illness how can you say this forum is depressive. Some of our members have improved and managed to return to work, so it offers us all hope.

    Many of us find comfort in each other. :twisted: :twisted: :twisted: :twisted:

    I am a trained holistic therapist and have been through all kinds of alternative treatments to try to help myself. The money I have spend trying.

    Remember what works for one does not work for others. Each person is different, although we do have some problems we share.

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  • Posted

    [color=red:65d7a3bd9b][size=18:65d7a3bd9b]Just tried to say we are all individuals we welcome all but not if you think we are a depressed group of people[/size:65d7a3bd9b][/color:65d7a3bd9b]
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  • Posted

    H. I do sincerely hope it is not our forum that you are referring to.

    I cannot believe that anyone would consider our numerous threads as 'depressing reading' ..... far from it in fact.

    I know that I speak for all my many cyber friends when I say that our ME lives have been greatly enriched by finding this forum.

    I'm pleased to hear that you have found ways of improving your quality of life with good nutrition and a host of supplements, and I can assure you that we know only too well that 'everyone with ME will have different symptoms' .... but I very much doubt whether the majority of us would have the finances to go down this road even if we chose to.

    I am a member of three ME organisations, all of whom advise against spending vast amounts of money on consultations and 'treatments'.

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  • Posted

    Just so there is no more misunderstanding perhaps you would care to clarify what you actually mean by 'website'.

    If you mean the PUK site itself then you need to clarify so that members of our forum do not feel under criticism. smile

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  • Posted

    Hi there Tracey :D

    Thanks for sharing your experience. It sounds as if you really worked hard at getting yourself to a reasonable level with your ME and I am so pleased that you were well enough to enjoy your honeymoon.

    But I'm so sorry to hear about the car crash :shock: How unfair is that?

    I do hope it won't be too long before you can resume your regime again.

    I used to be really fit too and was a regular at the gym. I sooo miss it, not only for the exercise but the social life too. I can just about manage a short dog walk a day but more than that and I am poorly the next day sad Very frustrating sad

    My gym have actually offered me the use of a personal trainer who has a lot of experience working with ME sufferers, but I'm not sure if I can cope with the lights, noise and smell (rubber mats!) of the actual gym itself. I always feel so much better when I am in the fresh air.

    Good luck Tracey and I do hope your back soon improves to enable you to get back on track smile Do feel free to join us on this forum if you would like to. We are all very supportive towards each other and manage to have a great laugh about most things at the same time ..... purely medicinal :D

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  • Posted

    H, i am a newly diagnosed CFS/ME sufferer but have also been diagnosed with 'Fibromyalgia' as have many others in this family group. If it had not been for these people and this site i would not be in such a positive state of mind regarding my illness. There is alot of very confusing information out there and YES i have read reviews on MANY books including those that you have 'recommended' and alot of them actually had 'bad' reviews. You say you 'Self-diagnosed'. Did you get a proper diagnosis from a qualified doctor? If not, then maybe you never actually had CFS/ME in the first place. Whatever, i offer you my congratulations on your 'recovery' and long may it last for you. I also offer some words of advice - try not to assume that ALL people with CFS/ME will have the same luck as you - and also be a little more sensitive to other peoples feelings. Stress is supposed to be avoided with this illness and just reading your comments and the way it attacked me and my 'family' here sent my stress levels through the ROOF!

    If i have taken your 'advice' wrongly then i apololgise, but maybe you need to work on the way you 'interact' with other people!!!!!


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  • Posted

    Hi folks :D

    Have just noticed the date on H's post ...... May 23 2006 .... so he/she wasn't actually referring to our fab forum as we didn't exist then :whistle:

    So we can all calm down a little now ..... :zen:

    It was still a very patronising post though ........ and I think the points we have made are still valid!

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  • Posted

    Tracey was obviously looking through the old threads, answered H's and hey presto :shock:

    Well that's what I think anyway :?

    It's okay Tracey, we won't hold it against you :lol:

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  • Posted

    Morning group

    That is exacting what has happened - anyone replying to an older post will automatically bring it back to the front of the queue.


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  • Posted

    Hi Lin

    Sorry about that :oops:

    We should have noted the date!

    Hope Tracey comes back to us ..... would have sent her a pm if I could.

    Just shows how protective we are of each other.

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  • Posted

    i guess the mystery H meant the PUKE website was depressing, but i still think that some of what s/he said was patronising and not sensitive to the diverse experiences of CFS/ME. :roll:

    i also want to take this opportunity to say that i have never met such a lot of focused, sensible, humble and down to earth people in my life as you lot. if we hear of some new 'cure' we're all open minded enough to research it, and intelligent enough to evaluate what we find. we're also always open to anyone having a moan, but are also so good at administrating a gentle, kindly kick up the backside when necessary. smile

    unfortunately the quite unique thing about CFS/ME is learning NOT to fight it, as opposed to so many other illnesses. this is so hard for most of us as we've all been manic overachievers! But we've all learnt from bitter experience that overdoing it is the worst thing we can do, and that crushing disappointment is as bad for us as a 3 mile sprint! :run:

    therefore, we do take the time to look at suggestions of remedies etc, but remember not to get our hopes up unless it has been medically approved or recommended by someone respected. i think this has got to be the most sensible approach in any situation!

    anyway, will also get off my soap box now. i really missed you all yesterday - virgin internet was down in the entire lambeth area :evil:

    Trees x

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  • Posted

    Hi Trees :D

    We missed you too sad

    Thanx :blush: ..... we realise we are a pretty talented, highly intelligent group of individuals ..... we can't help it ....... it's just the way we are :angel:

    It's just a great pity that this flipping illness is preventing us all from reaching our full potential :evil:

    But we will rise above it beat the damn thing one day smile

    Watch this space :ok:

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